SMAS vs duodenal malrotation

Hello @kjaffee

I can understand your wanting to get some perspective from others with this problem. As I looked on the internet, I did find that this is a rare disorder to occur in adults. Here is a link to an article from the National Institutes of Health https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947924/.

While we wait for others to join you in this discussion, perhaps you could share more about the type of symptoms you are having that led to this diagnosis. For example, what type of digestive tract symptoms are you experiencing?

To treat a rare disorder such as this it is a good idea to go to a medical facility that is research-oriented. Are you currently seeing a GI specialist who is part of a research-oriented medical center (like a university medical hospital or a facility like Mayo Clinic)?

Symptoms I am experiencing now include severe weight loss, no appetite, slow swallowing, constipation/diarrhea cycles, LUQ pain and weakness. Significant physical weakness. Previous symptoms included extreme nausea, and vomiting. At one point I was assigned the diagnosis "failure to thrive."

One CT shows evidence of SMA Syndrome. The next CT shows no evidence of SMA but has proof of duodenal malrotation. My surgeon calls my condition "bizarre" and we will do exploratory surgery to determine what radiography apparently cannot for me. Why is my duodenum moving around so much, and what are the treatment options?

Any input from anyone with experience in either or both diagnoses would be gratefully appreciated!

btw, I am having my treatment at OHSU in Portland, which is Oregon's teaching hospital. Depending results of my diagnostic procedure on 5/25, I may be needing a second opinion. Is it possible to obtain that opinion through Mayo Clinic?

Thanks @rozy288,

I needed that.

@kjaffee, I encourage you to seek a second opinion at Mayo Clinic. Here's the contact information to find out more and next steps: http://mayocl.in/1mtmR63

Let me know if you have any questions.

Thank you Colleen.
I will reach out.

I have had my diagnostic laparoscopy with the following findings. Would anyone possibly have input for me as to my unusual anatomy? How long this fix might last? Prognosis? Second opinion from Mayo Clinic?

"Partial malrotation, without apparent SMA syndrome. No Ladd bands nor para duodenal hernia however, at the LOT there was a mesenteroparietal recess (beneath the SMA vessels) whereby the proximal bowel tended to reside. The bowel was pulled from the recess but wanted to return to this retro SMA recess. We sutured the mesenteric tissue to the preaortic tissue to close off this recess. The LOT was pexyed the preaortic tissue straightening the bowel, as a lead point. EGD with moderate gastritis, likely slipped wrap and a hiatal Ticron stitch erosion noted. Duodenal diverticulum visualized without signs of inflammation, obstruction, or food residual."

@kjaffee

The findings are interesting. While Mayo Connect cannot give medical advice as we are simply patients like yourself. It appears that some procedures were done during the laparoscopy to try and stabilize the area. Is this your understanding as well?

Did the doctor offer you any ideas as to how this procedure might help you? Did the doctor give you a better understanding of the future of this disorder?

Given the rare nature of this health issue, please know that it is always your right to get a second opinion. Again, here's the contact information to find out more about getting a second opinion from Mayo Clinic, http://mayocl.in/1mtmR63

Will you post again and let me know how you are doing?

Hi Teresa,

Yes, the duodenum was nestled in a recess or cave in the abdominal wall. That recess was congenital. The surgeon "pexied" the duodenum to the wall and reinforced the recess. I have an upcoming postop with my surgeon on 6/25. I will be asking her about the prognosis for this pexy holding. I will also ask her about the role weight plays for me here since weight is critical for SMA Syndrome, but perhaps not so much with this "malrotation". Any input for other questions I should ask?
I have reached out to the Mayo Clinic GI Department, but they declined to give a second opinion; referring me to have that done locally.

I would like my fellow patients to know that there is a new Foundation that has been formed to support SMAS patients and their caregivers. I have previously posted under the title "SMAS vs duodenal malrotation". Please Google smasfoundation.org. The Foundation was started by an SMAS patient and her friends and family, and her GI specialist is on the Board. I found this organization while researching SMAS online. The Foundation's mission is to promote awareness of this rare condition, to contribute to research and development for finding treatments, and also to pursue funding to achieve these goals.

I was helped by the Foundation during a discussion with their GI MD advisor, who was very supportive and who encouraged me to have a diagnostic laparoscopy ASAP in order to determine my correct diagnosis for appropriate treatment. I followed his advice and found the answers for which I had been searching for years.

These people are very compassionate and they are good listeners! Check out their site, smasfoundation.org.